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Challenges & Solutions in participant-centered interventional trials?

This topic contains 1 reply, has 2 voices, and was last updated by Profile photo of Kiely Law Kiely Law 10 months, 2 weeks ago.

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  • #941
    Profile photo of Thomas Carton
    Thomas Carton
    Participant

    Hello everyone. Excited the Commons has launched and we can begin to have conversations that will lead to innovative ways to make research more people-centered. To get this conversation started, I wanted to pose this question: What challenges are you facing in conducting participant-centered interventional trials and what are your recommended solutions?” I welcome your thoughts and ideas.

    • This topic was modified 10 months, 2 weeks ago by Profile photo of Thomas Carton Thomas Carton.
    • This topic was modified 10 months, 2 weeks ago by Profile photo of Thomas Carton Thomas Carton.
    #948
    Profile photo of Kiely Law
    Kiely Law
    Participant

    Great question! In my experience, a participant-centered interventional trial does NOT necessarily equate with a participant-friendly protocol.  For example, we have worked with industry sponsors wanting to engage  adults with autism in novel medication trials.  Although the need for effective interventions is a top priority in the community and the study outcome measures were patient-centered, the study protocol itself was too onerous (multiple clinic visits that also required the participant to bring a caregiver/outside informant).  Ultimately, the study failed because of the protocol and lack of community participation. I think this experience underscores the NEED to include the patient community in all aspects of the research study, including planning and designing the protocol.

    • This reply was modified 10 months, 2 weeks ago by Profile photo of Kiely Law Kiely Law.
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